An Inspirational Story of a Mother's Love for a Special Needs Child

I was on the internet this  morning when I came across this blog post titled, "A Mother's Love for a Special Needs Child; A Mother's Love Can't Be Explained".  The blog is, "Organize with Sandy" and she detailed her cousin's loss of their special needs daughter, who was 30 years old.  What makes this post a winner was not only the love that her cousin and husband had for her daughter, but how eloquently Sandy describes this. She writes,

 

"We all know that Mother’s love their children, and we love them in a way we didn’t know we could, right?  But what about those children who have special needs? Some people who do not have special needs children can think that a parent might “love them less” because they aren’t perfect.  That they might “love them less” because they change the parents life style, change the life they pictured or believed they would have .  They think that they might “love them less” because they can’t leave their child with a sitter, or might not be able to go on vacations..."

 

What was striking to me is that I had never, ever considered that some people might think that I, or anyone, would love their special needs child "less" because they were disabled.  I can also understand how this might be true for some parents.

 

Sandy goes on to write, "I have seen many many examples of how strong a mothers love can be, even for some children that do not respond to them… or respond in ways that others can recognize. For children that have cost them their careers, made them move into very small homes due to the financial crisis they now had to deal with, cost them their marriages because of the stress, cost them the life they wanted. "

 

What is striking about her post, is not only the love that her cousin and family had for her daughter, but how many parents of special needs children could relate to her story. I know it certainly could have been written about me.

 

If you get a chance, you may want to read the rest of this story. It will make your day.

 

Dear Son Blenderized Diet & Update

It's been a while since I've given an update on Dear Son. I know many of you have asked for more detail on his blenderized diet.  Overall, he's done amazingly well. Recently, he went to the neurologist and he lost 10.5 pounds in the last three months. He has now lost 15 pounds since December 20th when he started his real food diet. I am really happy about this because he's eating the same number of calories as he did when he was on the formula (which the second ingedient is corn syrup and this is one of the better formulas that the nutritionists at the Big City Children's Hospital recommended, lol.).

 

 

Since he only gets around 1300 calories a day, I didn't feel good about cutting his calories back to lose weight. I am thrilled though, that even though he can't move hardly at all, that he was able to lose this weight.

So what is he eating? His Mama's cooking!  Seriously, there is a whole lot of cooking going on here. I cook on average five items per day.  I make everything from scratch and use mostly fresh fruits and vegetables. Dear Son gets 11 servings of fruits and vegetables per day! 

I created my own diet plan for him and breakfast consists of : one fruit, one probiotic, one carb and an omega 3. A sample breakfast is 1/2 cup of kefir, 1/2 cup of berries or a piece of fruit, 1/2 cup organic brown rice cooked (think of rice cereal; I like Lundberg Brown Basmati Rice) or 1/2 cup oats (soaked and/or cooked) and 2 tbsp of organic ground flaxseed or some other omega 3 (often I'll use different types of nuts/seeds).  Today's breakfast was 1/2 cup Lifeway Cherry Kefir, one peach, 1/2 cup oats and 2 tbsp of organic ground flaxseed. I add 1.5 cups of water and place in the Blendtec. I hit the smoothie button once and then Level 10 for 35 seconds. I pour it in a bowl and then give him 4 syringes (equals one cup) every 30 minutes. After being on the diet for a while, I now will give him 8 syringes for the first serving of breakfast and then wait 40 minutes until the next cup. Then I give 4 syringes (1 cup) and wait another 30 minutes.

Each meal consists of 1.5 cups of water. If I am giving him foods that have a lot of water content, I'll reduce the water a bit to a little over a cup so that I can keep the total volume under 4 cups.

Lunch and dinner are the same. I do all of my cooking early in the day and whatever we have for lunch is what he'll have for dinner. After all, it's going right into his feeding tube and nothing via his mouth. 

Lunch is 4 cups (fill it up to the 4 cup mark on the Blendtec) of leafy greens (I rotate all of my greens according to a schedule.), 1 fruit, 1 cup of cooked vegetables (1/2 cup is one serving), 2 oz of protein, 1 carb (usually is one slice of my homemade bread which his 3.1 grams of fiber) and 100 calories of fat (most often it's a tablespoon of butter).

This meal consists of 4 cups organic spinach, organic orange, organic sirloin steak, asparagus, my homemade whole wheat bread and butter. Off into the Blendtec it goes!

 

 

 

 

 

To give you another example, today's lunch was 4 cups of leafy green lettuce, 1 cup whole strawberries, 1 cup snow peas, 2 oz. of organic chicken (seasoned with sea salt and organic black pepper), one slice of whole wheat home made bread, one tbsp of sweet cream butter. I add 1.5 cups of water and blend it. I hit the smoothie button and then Level 10 for 35 seconds. He gets the same formula, so to speak for dinner. While I don't count calories any more, I do measure everything.

My protein sources for him include: Sommers Organic Skinless Boneless Chicken Breast, Sommers Organic Sirloin Steak, Sommers Organic Chopped Sirloin 97/3, Vital Farms Organic Eggs (see photo above), Albacore Tuna, Trader Joe's Ahi Tuna and Eden Organic Black Beans to name a few. I make all my own bread for him. I rotate the greens and try to use as many organic fruits and vegetables as I can afford.  I also give him 1/4 cup of kefir  at midnight with his meds. For omega 3's, I vary the nuts/seeds and use other food sources for omega 3's.

In this photo, Dear Son is having romaine lettuce, carrots, an organic chopped sirloin hamburger (2 oz.) (made with organic onions, sea salt and organic black pepper), on his Mama's home made poppy seed bun (he gets 1/2 of one) and an herb butter mix (downsized for us) spread on the bun.  The fruit was pineapple.

In this photo, here is a smoothie I made for him.  Back in April, before I converted his school lunch, he'd get 1 can of formula at school and then I'd make a smoothie for the remaining calories. In this photo, he has organic baby spinach, organic banana and organic strawberries for lunch.  As of June, all of his meals are now converted to real food. 

 



Things I won't do are the following: no fake foods, no junk foods, no foods with sugar (sugar is an anti-nutrient so I try to stay away from that), no protein powders, no soy, no non-organic meats/poultry and no non-organic milk. I rarely give him any milk since I give him kefir although he does get some dairy.  I also watch toxins for him.  I stay away from any canned foods (contains BPA), never use a microwave (gave that up 2 years ago plus it denatures the food), don't use teflon, no aluminum cookware and try to limit toxins of any kinds. I also use natural or plant based cleaning products in our home. I transitioned to natural cleaning products a few years back but I wanted to mention it here. 

There were a few books that were the foundation for the blenderized diet.  The first is, "Never Be Sick Again". I think this was a great book because it helps you undertand the role of both nutrition and toxins in terms of disease. Second, I liked the book, Super Foods RX: 14 Foods That Will Change Your Life. While certainly, we are inundated with tons of books and internet links to "super foods', this book made it easy for me and provided a nice foundation for super foods. And finally, Nourishing Traditions by Sally Fallon. I won't go into more detail on these books since this post is long enough.

Overall, it's been a great transition for Dear Son.  He seems happier, more alert and cognitively, he is much improved. He's lost a lot of weight and this is actually the only time he's lost weight other than when he's been sick. His acne improved and his face looks 85% better and he's no longer on an antibiotic for acne and no longer uses a prescription acne cream. He no longer  has dandruff. He used to have dandruff so bad I kept his hair short. Now it doesn't matter. The new blenderized diet seems to make him feel full-he no longer wakes up early in the morning wanting me to start his food. He sleeps through the night more and seems overall a lot better. His neurologist says it's the , "best he's seen him in years" and his other docs are amazed that he's so much more alert now.

While it's been great for Dear Son, it's also been hard. In the beginning, I counted every calorie online and this was very time consuming, along with cooking all his food from scratch plus working.Meals take a while because he only gets 1 cup every 30 minutes so a meal takes two hours to administer on average. I no longer count calories for him but I do measure.

Some things did not go very well.  Initially, I tried to put the food through the feeding bag. I learned later that blenderized diets never go through the bags because the feeding pumps aren't strong enough to push the food through.  Also, we had to get a larger button (this is the button that goes in his stomach and which is where I feed him).  The minimum size is a 14 FR for tube feedings and we only had a 12 French which made it much harder.  In the beginning, I didn't know what setting to use for the blender-should I try the juice button, smoothe button, soup button or what?  It was a bit overwhelming and since blenderized diets aren't promoted, there isn't a lot out there. It was a lot of trial and error but now it easy to do.Because I created a formula, I can create a meal for around 400 calories no matter where I am at and I like that.

On the down side, there were a few disasters.  First, at the beginning of May, I converted his breakfast over from formula to the blenderized diet. I added kefir which contains probiotics. Well, he got the flu after that. I am assuming that his body wasn't strong enough yet to battle the bateria in the kefir. The flu threw me for a loop. On the one hand, I was so depressed he got the flu and then I thought that was pretty unrealistic. The good news is that while he got the flu, he only threw up twice AND I was able to manage it at home and he didn't have to be admitted to the hospital. This was the first time in his life that he had the flu and it didn't require a hospital admission. Amazing. The second flop came when I tried to add a multi-vitamin to his regime. I researched these multi-vitamins and thought I found a good one. I emailed the vitamin manufacturer to ask some questions since I would need to crush it to administer it and they had a formula that should not be crushed. Anyway, they directed me to the multi that I could crush. I gave him one dose and after two days, I added the second dose (the normal dose was two vitamins/day).  Well, Dear Son began having some severe choking episodes after that and nearly choked to death.  I ended up stopping the vitamins. I am not sure what caused the severe choking but my guess is that the green tea extract in the vitamins caused seizures and he wasn't able to process the secretions and he choked. I had to stop giving him tea in February because the tea seemed to increase seizures for him (he was born without any gaba due to his gene mutation) and my best guess is that the green tea extract was too much of a stimulant for him. At this point, I have been reluctant to add a multi-vitamin after that disaster.

Aside from the blenderized diet, he overall is doing well except for some severe choking. Dear Son's throat muscles have deteriorated with is progressive disease and he is unable to process his own secretions. Normal people swallow their own saliva throughout the day but he can't swallow (which is why he uses a feeding tube) so he is choking on his own saliva.  We have tried the normal treatments of Robinul and even botox injections in 2008 for him but they both failed. We had been using a Scopolamine patch for many years up until the manufacturing shortage. Once we stopped the patch, we learned that it was actually causing seizures for Dear Son. When we tried the patch after the manufacturing issue was resolved, we could tell that it was causing seizures for him so now we can't use that.  We met with an ENT to discuss the possibility of the removal of his submandibular glands and one of his parotid glands. I thought perhaps since Dear Son was healthy, this might be a good time to consider this surgery.  The idea is that if those salivary glands were removed, the problem would be lessened/solved and then Dear Son wouldn't choke if less saliva was created. Well, it wasn't that easy. We met with the surgeon and even if he did the surgery, there was no guarantee it would work. In some cases, there is a lot of improvement, in others a 50% improvement and in others, no improvement at all. Dear Son is a high surgical risk for respiratory depression (his lung collapes in May of 2009 during his surgery) and a huge surgical risk for aspiration (his lung collapsed when they didn't protect the airway with a breathing tube so he choked on his saliva and it pooled causing a mucous plug and his lung collapsed). The surgeon suggested we meet with anesthesia to determine the risks.  As it turned out, the risk proved too great for us to do any surgery. Not only would they have difficulty getting him intubated (putting the breathing tube in his for surgery) but there was no guarantee they could extubate him (meaning remove the breathing tube after surgery and having Dear Son breate on his own). There was no guarantee he wouldn't be on a ventilator and no guarantee they could remove it. In the end, the risk was just too high. So now we are left with him coughing and choking a lot. Some days, it's very bad and on those days, we put the patch on for a few hours until the siezures start up and then we have to remove it. The whole surgery discussion took us a while and it seemed like we had nothing but doctor visits for a few weeks.

Other than that, things are o.k. I hesitated to give an update until I had news to share. Some days, it's depressing when he's choking knowing there isn't anything more I can do. I know at some point, his time will come but until then, I'll do everything I can to keep him as healthy as possible. September will be two years since Dear Son's been hospitalized for pneumonia so that's progress. I started him on Now Foods Organic Virgin Coconut Oil and that has worked well. The blenderized diet has worked well and hopefully I can continue to build his immune system.  In the end, it's all a lot of work but I can honestly say that I work hard every day to keep him as healthy as he can be. For a man like Dear Son, it's not easy trying to keep him healthy. His body just doesn't work like a normal person's. I am thrilled though for all of the progess he's made. We saw the neurologist two weeks ago and he was surprised at how alert he was. We saw the GI last week and he couldn't get over how well Dear Son was doing. He told me three times not to change anything and that Dear Son looks great. He nixed doing any kind of testing on Dear Son since the risk of performing a test on his was too high.

So, that's where we are at. Dear Son is doing really well overall but the choking remains a problem and there isn't much we can do about it.

BACK TO SCHOOL ORGANIZATION-THE WHEELCHAIR EMERGENCY BAG

My apologies for the delay in posting. It's been a busy summer!  Here is a photo of Dear Son at a doctor's visit the other day. He's doing amazingly well.  He is having one significant choking/swallowing problem and I am not sure what more we can do. His throat muscles are deteriorating with his progressive disease and he is unable to process his secretions.

In other news, I have completd his transition to a blenderized diet. He really likes it and he losing weight too. I am pretty excited. You can see above that he looks great.  I am still giddy when I see him happy and smiling; you can just tell he feels so good now.

Today, I want to share with you a new purchase I made recently. On the back of Dear Son's wheelchair, I have two backpacks (here is his wheelchair in the hallway outside my apartment). The outer backpack stores an extra pair of clothes for school (he is incontinent due to his disabilities), the outer pocket stores his school notebook and the inner backpack, or backpack on the inside stores his emergency supplies.

While the back pack was organized, it wasn't much fun to get out the supplies you need. I had the supplies organized into ziplock bags. Here are the contents of the emergency bag before I purchased "Joy Mangano's Better Beauty Case".

And here is the after. I used the smaller beauty case to store the magnet that activates his Vagus Nerve Stimulator. I also use it to store an extra g-tube button, a first aid kit for his g-tube (this is in case it ever fell out) and some rubber gloves.

In the larger case, I keep everything for feeding and medications.  In this bag, I store some syringes and extension tube in the first one, meds/pill crusher and a container to mix the meds in the second case. The third case holds formula. While I rarely use it, it is convenient sometimes.  In the last case, I store rubber gloves, hand sanitizer and a washcloth.

Here is a close up of the bags.

Of course I labeled everything, just like before:)

The kit included two extra zipperd pouches. I used one to store two extra feeding bags and the other ones to store rubber gloves for diaper changes.

Here are the large and smaller bags.

Here are the bags and the extra cases.

The cases are great because they fold up like this.

This is what they look like from the front.

Here is everything again. I just love these bags.  There is a reason they sold 150,000 of these in one day. Can you believe that?  These bags are genius!  You could use these for so many things-you could put them in an infant diaper bag, you could use them as a travel bag with kids toys, you could use them to store coloring/art supplies for the kids. You could use them for Barbie doll accessories and shoes. And of course you could use them for beauty/travel supplies. They would be great for arts and crafts or taking  your knitting supplies somewhere. Thousands of uses. Really!

I purchased the bags as a "today's special" for only $25 which included shipping and handling.

And finally, one more picture of Dear Son.  I took this picture when I was getting ready to feed him his "real food" meal after he came home from his Dad's. Dad still feeds him formula however you could tell Dear Son was so excited to get back to his Mama's home cooked meals.

Summer Walk

I took this photo of Dear Son the other morning after I got him up into the chair.  He's off school for the month of June and I've been pretty busy taking care of him 24/7 plus cooking all of his meals from scratch, doing the blenderized meals, plus everything else that comes with caring for him.  He's been absolutely delightful though. He loves listening to his country music every day. 

Today we went out for a small walk around our neighborhood. This is the entrance to our apartment complex. I like taking a picture of him here because of the pretty flowers.

It was really sunny (and hot!) so it made it a bit hard to take photos and view the photos I took in the sun.

He was happy to go for a walk but wouldn't smile for any pictures!

 For some reason, I didn't notice that his arm wasn't propped up on the arm rests.  He can't move his arms by himself so I have to prop them up there for him. You'll have to pardon the visor, not very manly however he refuses to wear ball caps. I tried to get him to wear them but he hates hats.  He just leans his head over until they fall off, lol. He will wear a visor so that is the best I can do to keep the sun out of his eyes.

We live in an apartment complex on the golf course. There is a river that runs along the golf course and walking trail. I just love walking the trail and never get tired of the views. We see a lot of wildlife when we walk too and it's wonderful to hear all of the birds.

I just signed another lease here however hopefully, it will be my last one. I am hoping to purchase a home next year for us. I need to find an ranch home with an open floor plan. For some reason, he wouldn't smile for the pictures today. He was thrilled to go for a walk though. Typically, he likes going for a walk with his Dad because they walk over to the movie theaters nearby and Dear Son likes to watch the girls. I told him we can't do that because Moms shouldn't go with their sons for girlwatching.

School informed me that his favorite song is, "What's a Guy Gotta Do to Get a Girl in This Town". I had to go to the cowboy lyrics website to get the lyrics. It goes something like this, "What's a guy gotta do to get a girl in this town, I don't wanna be alone when the sun goes down, just need a little someone to put my arms around, what's a guy gotta do to get a girl in this town?"

Dear Son is so sweet and it makes me sad to think he's not going to date or get married some day. I am sure he has dreams of a girlfriend like other young men his age do. It's sad.

Another picture of the trail.

He wouldn't smile for our walk however this man was walking his dog and the dog wanted to come over near Dear Son and when the man pulled the leash to pull the dog back, Dear Son cracked up. He likes someone (even a dog) getting in trouble. That was the closest I could get to a smile for pictures today.

Overall, he's doing o.k.  He's been having some severe choking episodes for the last month and I am unclear as to what is causing them. His throat muscles have deteriorated so he can't swallow/process his own secretions. As a result, they get caught in his throat and he's been choking on them. He actually had some pretty severe episodes last month that seemed almost like an allergic reaction of sorts. It started after I started a new multi-vitamin. I discontinued that and while the airway swelling seems to have stopped, he is still having some choking episodes that will require a doctor visit or two to determine if there is some underlying issue.

He'll start summer school for three weeks in July so I am looking forward to getting a little break. It's really pretty tough doing 24/7 care without any breaks. He is however enjoying his daily leg massages. I rub coconut oil on his legs and feet and he smiles every day when I rub his legs and feet. I tell him that everyone likes having their feet rubbed. I used to rub his legs/feet every day to reduce swelling however it's not really an issue like it once was but he really enjoys it so I do it anyway.

Happy Mother's Day

Mother's Day is always my favorite day of the  year.  I have been blessed with the best son in the world. I thought it might be nice to tell you some my, "Top 10 Favorite Things About Dear Son":

1. He always has a smile on his face.

2. He gives good hugs.

3. He is happy to the core!

4. He gets along well with everyone.

Dear Son on his 19th birthday at school.

Dear Son and his girlfriend at school on his birthday.

5. He has a great laugh.

  

6. He's gorgeous.

7. He's very photogenic.

Make a Wish Trip 2010

8. He takes in everything life has to offer.



Bowling with school friends.

9. He laughs when things go wrong.

 

10. He loves his Mom.

 

Dear Son and I at school in 2009.